Kaitlyn O'Grady
Massachusetts cystic fibrosis patient advocate Kaitlyn O’Grady shows off her medal after completing the 2021 Boston Marathon. (Photo by Kevin O’Grady)

WASHINGTON—Kaitlyn O’Grady was diagnosed with cystic fibrosis (CF) at the age of 6. Throughout childhood, she had constant gastrointestinal issues and chronic sinus problems.

The lung infections and hospitalizations would come later on, but back then—with constant encouragement from her father—the young girl started running every day.

She never stopped, even finishing the New York City Half Marathon in 1 hour and 39 minutes while still in high school.

In 2021, O’Grady, who has had trouble breathing all her life, managed to complete the 26.2-mile Boston Marathon along with 9 other people CF—raising some $10,000 toward research on the disease along the way.

“Growing up, I was very timid. I was also embarrassed by my CF. But when I started running, I became confident in myself,” O’Grady said during a panel discussion on exercise at the American Thoracic Society’s ATS 2023 conference here.

O’Grady’s presentation, “Every Mile Changes You: A Patient’s Perspective,” was followed by presentations from Michele Manion, president and executive director of the Primary Ciliary Dyskinesia (PCD) Foundation; Lynn Schnapp, MD, of the University of Wisconsin in Madison and immediate past-president of the ATS; and Carolyn Rochester, MD, of the Yale University School of Medicine in New Haven, Connecticut.

Also on the panel were: Asha Chestnutt, MD; Mary Beth Brown, PT, PhD, of the University of Washington in Seattle; and David Mannino, MD, of the University of Kentucky in Lexington.

“Running has saved my life,” said O’Grady, 28. “Early on, my doctors recommended an active lifestyle, and told me to find a sport I would enjoy. I started out with soccer and was horrible at it. But I really enjoyed running up and down the field, so later I joined my middle school cross-country team, which kick-started my career.”

Kaitlyn O’Grady runs the 2021 Boston Marathon. (Photo by Temi Baj)

O’Grady recalled that once she started running competitively, she realized that other girls her age could still run their best when they got colds.

“Because of my running, it was easier for me to bounce back after infections,” said the young woman, who enjoys spending time with her fiancée, Phil, and her dog, Rex, when not training. “It loosens up mucus and I’m able to cough it up much more easily. It also makes it easier to do my treatments, and running every day has strengthened my lungs,”

In 2019, the year after she moved from upstate New York to Massachusetts, O’Grady was hospitalized in Boston with the flu and began receiving intravenous antibiotics. That year, doctors put her on elexacaftor/tezacaftor/ivacaftor (Trikafta®), a Vertex disease-modifying therapy she said “would change my life.”

For the first time, O’Grady said, she was able to gain weight and not be out of breath.

“Unfortunately, something called COVID came around and the marathon was rescheduled to 2021,” she said. “But that ended up being the best day of my life. There were 10 of us with CF out there running. We were miles apart, but we were connected by one disease.”

Eventually, O’Grady decided to become a running coach for others with chronic illnesses. Her organization, Mission Breathe Again, aims to motivate others through personalized workout programs, monthly running logs, and biweekly video chats.

“Cystic fibrosis can be a very lonely disease. But thanks to social media, we can now join many different groups. I’m part of a group of CF patients who train hard,” she said. “This group is so encouraging, and if I ever have questions, someone’s willing to answer them.”

Examples of athletes with cystic fibrosis, like O’Grady, are likely to increase in coming years as treatments and better care mean the majority of patients with CF are now adults rather than children.

Kathleen Ramos, MD, a pulmonologist with the University of Washington in Seattle, spoke at the recent ATS 2023 conference in Washington. (Photo by Larry Luxner)

At present, the life expectancy of an individual with CF stands at 53.1 years, up from the late 20s in 1990, according to Kathleen Ramos, MD, a pulmonologist at the University of Washington in Seattle. A child born with CF in 2021 can expect to live 65.6 years, according to Dr. Ramos, citing the latest Cystic Fibrosis Foundation Patient Registry.

“The CF population is changing rapidly, and while the number of pediatric patients remains stable, the adult population is increasing in size, and they’ll live to be older and less symptomatic,” said Dr. Ramos, who also spoke at ATS 2023.

“Yet they still need to take their meds every day, and still need quarterly visits with their CF centers. Many have diabetes, sinus disease, bone issues like osteoporosis, and gastrointestinal symptoms. So even though things are better, it’s still a really complicated disease.”

Exercise is certainly one way to extend life expectancy, said Dr. Mannino, who among other things is medical director of the COPD Foundation.

“Fitness predicts survival. The more sedentary you are, the higher your risk of death is relative to people who are more physically active. This should come as a surprise to no one,” he said. “Some people just happen to be more physically active than others. But any activity is better than none, and more is better than less.”